United Brachial Plexus Network, Inc.

Thank you all so much!

Douglas is enrolled in the New York early intervention program and gets physical therapy twice a week. Also I'm sending Dr Nath a video of his arm today.

My daughter had a shoulder distocia without injury--I had an epidural (spelling!) and labored 37 hours. With Douglas I had a 4 hour labor in a hot tub and a natural birth. I started to push on my knees and then the midwife asked me to turn over onto my back and that's when it happened. My husband said after his head came out she just pulled on his head until he was born.

Not sure what to do about all my feelings about the birth....

It's so good too talk with other people dealing with this injury! I'm struggling to stay strong for my son, daughter and husband...

When I said that Douglas doesn't cry in the sling I meant the one I wear him in. It's a carrier--he likes to be close. He doesn't have an arm sling.

Jennie

Hi, Jennie:

I e-mailed you privately, so I hope you got it!
I'm so glad you sent a video to Dr. Nath. Please let us know how Douglas progresses! We are all pulling for you guys!

Janet

Hi Jennie. I'm Tanya, mother of Amber who is almost 19 months old with ROBPI. I'm so sorry to hear how your little one is handling all of this. I agree that there can be pain involved with this injury. BUT, keep doing those ROM exercises! That can't be stressed enough. We're at a stage where Amber wants to be mobile all the time and doesn't want to stay put for the ROM and she has some very tight external rotation, so she winces when we try to do these. But, that said...we still do them. A couple stretches here, a couple there. We get them in during the day. Be creative as your son gets older. Look for hints other parents might post on here, too.

Also, I see your son is in NY State's Early Intervention. I live in NY State about 1 1/2 hours from Syracuse. What about the medicaide waiver program. It's medicaide, but it is just for the injured child. It is okay if you have a good income and other health insurance. We have private insurance and make more money than the regular medicaide income guidelines, but we still got the medicaide waiver for Amber. It's great because our private insurance would only pay for 2 months of aquatic therapy and now the waiver program picks up after that. Also, our insurance has a $20 co-pay for each doctor visit and aquatic/OT/PT visit which can add up quickly, so now the waiver program helps with that too. If a brace is needed or other adaptive items, they will sometimes cover it, too. Try contacting a medicaide caseworker to get all the information, or feel free to email me for the info.

Good luck.

Tanya in NY
(Nursemidwife86@cs.com)

PS: I'm not a midwife as my email address states. It would be a dream of mine to become one once my children are grown, but right now I'm a RN who works in 2 labor and delivery units trying to help prevent these injuries).

hi. my name is michelle and my email is mmatthews111@aol.com
i have a 2 year old son who has had primarary and secondary surgery. feel free to email me any time that you need a shoulder!

Hi!

My son is now almost five months and has ROBPI. He is sweet and happy as can be
A couple of months ago I was in dispair with his agony and crying all the time. Then he stopped crying SO much when he was 2 months old and after surgery even improved more. The doctors said the injury wouldn't cause much pain, but now I think perhaps they were wrong. It took me a while to remember my own nephew - he was an angel when he was born, always sleeping and eating, he hardly ever cried. When I remembered this (my nephew is now 7) I was a bit afraid something was really hurting my baby. Sebastião is my first son so I really thought this type of crying all the time was normal.

I wouldn't have five minutes, I couldn't go out. He was either crying, eating or throwing up. He did sleep a bit also, which felt very confortable, for half an hour, one hour. He was always throwing up milk and I was always feeding him. After the operation that deffinetly stopped and now I have time again. He probably had something wrong in the phrenic nerve as well so the throwing up was awful, always cleaning clothes for the three of us... I can't tell you enough... when he started crying I would cry also, sometimes I had the feeling I was hurting him to dress him and things like that.

He is a thousand times better and is really happy now and it's only been four months We went to Paris this week, for work, from Lisbon (2 hour flight) and he never cried, the all four days, at the plane, at the restaurants, at the hotel, always smiling and a really happy baby, I would never think this was possible some months ago.

In time, things will get a lot better, I'm really sure of that

I have a 15month old son who had erbs palsy in his right arm. When he was born he weighed 11pd 3 oz. He couldnt move his right arm at all. Now he has function in his hand and shoulder and can lift his arm to 90 degrees. Therepy and the right doctor are very important. Hopefully he will improve. My son had nerve surgery at 6 months but he still has no bicept function. Just keep praying and I will be praying for you. I have a question for you. Did you ever here of this type injury before it happened to your son? I hadnt and I had absolutely no information.

Jennie,
I have a 17 year old daughter, Emily, who has a ROBPI. I can remember feeling exactly as you did - and I want to tell you it WILL get better. The crying is so hard! All I can tell you is, in spite of the pain, these kids grow up to be strong, sensitive and extra-special people. Find a doctor you are comfortable with, listen to your heart (and don't ever second guess your gut feelings!) when making decisions.
God bless you, today and always.
Sue

Little Douglas is now 14 weeks.

His pec muscle is working.... maybe a little tricep since we get a bit of resistance with ROM. The last EMG (earlier this week) showed upper and lower root problems.... We've had several Doctors say that they have never seen an injury this severe.

He's getting primary at TCH with Dr Nath in August. We are very confident in our choice of surgeon--that helps us relax a bit.

I got some back issues of Outreach and LOVE THEM SO MUCH i've re-read them each at least 3 times. Thank you to the board and all the families and people dealing with this! You have all helped me remember what is important! I have a new little baby boy! And he's so cute!!!!

Our son is almost 6 years old and he was born at 36 weeks and a little under 8 lbs with erbs palsy. We still don't fully understand why.

We took him to TCH to have surgery when he was 5 1/2 months and will never regret it.

It is hard to remember doing ROM excersize with him now and it has been a year since he had therapy. Yes, five years of therapy is a long time but it goes by fast and he loved it.

He swims, fishes, loves bike riding, likes playing basketball and t-ball, enjoyed gymnastics class (never had a problem hanging and has never re-injured his arm), currently takes Okanowan Karate classes, climbs and plays like all the other kids. He wants a mountain dulcimer for his birthday and he is going to get it.

Our son was never bothered by his arm but I know other kids that have felt pain.

The only thing we ever did was try to make things fun. I remember doing arm excersises like we were pretending to drive a car and still have enough cookie cutters for an army of kids with playdough and can tell you that you can make four rolling pins from one wooden dowel. Playdough is easy to make at home and koolaid works great for watercolor paint. Get a tabletop art easel for sure because they are priceless! Make your own postcards with unlined notecards and some watercolor paint and send them to family. The Frugal Shopper website is a great place to find cheap activities, craft recipes and so on and try out familyfun.com too.

We have one rule and that is that if he is willing to try it we are willing to let him and so far it has worked for us.

Enjoy everthing to the fullest and celebrate every victory. Things have gotten so much better that I don't worry about anything thinking he can't do it because he can do anything he wants to.

Hi Krista,

I noticed you mentioned that your daughter had surgery in Boston. I live in Plymouth and was referred to Dr. Peter Waters at Boston Childrens Hospital. We will be seeing him on August 16th. I was curious who did your daughters surgery. I have so many questions about her injury and prognosis. I'm glad to hear your daughter has had increase in functionality and strength. I'm so confused and sad right now that my daughter had to go through this BI. I'm sure that those feelings will subside (as initially I was not upset because I wanted to see how she progressed before getting upset).

My Ashleigh is 7 weeks old now and since birth had finger, wrist and hand movement. She can shrug a bit too. Luckily my husband and I are both licensed PT Assistants so we knew the ROM that should be done and started it immediately. I just feel overwhelmed by all the possible treatments... EI is doing an eval on August 2nd and I'm hoping to receive PT and OT services for Ashleigh. It seems many people here receive both and I'd like as much therapy as she can recieve. Any advice/recommendations/support would be great! Thanks for listening.